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Topic: Tinnitus, blurred vision..other weird symptoms

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Nov 4, 2017 03:57PM

swg wrote:

Right around the time I was diagnosed, I got a UTI. My dr. gave me Bactrim. I switched to Macrobid because it seemed to cause all kinds of problems, including Tinnitus.

Well, the tinnitus has gotten worse. And now my vision is very blurry, and my eyes are very irritated. And I have a weird twitching in my lip, as well as the feeling I'm being poked, from time to time, on various areas of my skin.

Of course now that I have BC I'm paranoid the cancer has spread to my brain or something. UGH.

I don't even know if any of this stuff is related to each other..or related to the cancer.

I haven't seen an oncologist yet and I'm supposed to get my pre-surgery tests-blood, EKG etc. soon so maybe I should just tell the dr who does those tests.

Anyone had any weird symptoms like this that turned out to be related to cancer?

thx

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Jul 3, 2018 09:33PM sas-schatzi wrote:

re-read above. My dear husband passed in 2010. Donnie is my boyfriend since 2012. He is a HVAC guy. He is the one that rips up is skin and never gets infected. His immune system is so strong..

As An old nurse I see his wounds,I think antibiotics, stitches, dressings, woundcare. He thinks duct tape, never considers stopping to wash the wound. Never ever gets infected. Knock on wood. Thinking of the immune system of the aboriginal peoples and then of societies where the higher incidence of disease is in the higher classes....interesting.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jul 5, 2018 04:27PM QuinnCat wrote:

No news on MRI. I'm still in denial, not wanting to know. Would they just not call if something bad there? (That actually happened to me with BC and my mammogram - they had filed the results away.) My tinnitus persists. I've given up on the gluten free strategy in the meantime.

In the meantime, my blood work, which arrived in a letter after my appointments (total screw up on independent lab) has some hinky numbers for BUN (high) and Calcium (high). Creatine normal. Worried, especially on the Calcium. Normal is 8.8-10, mine is 10.5. BUN normal is 9.8-20.1, mine is 30.0. Never have had out of range numbers for anything but hsCRP. Dr. Google on the high Calcium is somewhat scary.

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Jul 5, 2018 06:46PM Meow13 wrote:

Hope you here good news soon Quinn. I didn't want to know the last time, but it turned out ok thinking good thoughts for you.

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Jul 8, 2018 01:44AM sas-schatzi wrote:

Quinn, high calcium has to be put into perspective. Plus, one value needs to be verified by subsequent values. Talk with your PCP. Elevated BUN may simply mean you were dehydrated that day. Me I'd check in with my nephrologist, but I had one b/c of a chemo screw up. The other type of doc that deals with calcium is endocrinologist. But your PCP should be able to order some more tests before sending you off to someone.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jul 8, 2018 07:47PM QuinnCat wrote:

ok...called my friend a retired surgeon and my own physician’s PA emailed me back. Both said the same thing as I’ve read and what you’ve said Sas. Dehydration probably and good creatinine normal (I did a one hour hike before blood work) and high Ca would not be an early sign of bone Mets. The PA also noted my corrected CA was normal which was good, though the surgeon didn’t have much to say about that.

Guess I should call on the MRI tomorrow. I’ve had enough denial

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Jul 9, 2018 08:29AM sas-schatzi wrote:

Quinn, glad you feel better about your lab values. The reason the surgeon didn't say much is, they deal with basic labs i.e the ones they need to know to allow surgery to be done. CBC & basic electrolytes& UA. Uniformly, they have a medical doc do the clearance on anything specific. Then if there is an admission the medical doc will follow the medical aspect of patient care. Remember surgeons are cutters. They learned all the lab stuff in residency, but over time since it's uniformly delegated the nuances of labs fade. 

Off subject a bit. Since hearing loss is so associated with tinnitus. I just got a new HP pavillion360. The audio is fabulous. It is light years better than my last three computers. WhoHooo. 

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jul 10, 2018 03:42PM - edited Jul 10, 2018 03:42PM by QuinnCat

Lovely when vision and hearing are better! I keep hearing that cataract sugery makes colors more brilliant. I can't imagine color being better than Wgat I have now (I have cats in both eyes). I'm a Mac girl through and through, though usually turning the audio off. I like to read my news and need to figure out how to turn these videos off.

Called the ENT for results. Could only leave a message. I was ready in that instant to hear the MRI results. Not so sure I like the waiting for a call back now

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Jul 18, 2018 06:07PM QuinnCat wrote:

Update - finally in the town where my MRI was done and where ENT office is. I was with my friend who happens to be a therapist and thought who better to be with while getting bad news, so we took a drive over to the ENT (mind you, this was after calling last week Monday and leaving a voicemail - where is my MRI?).

It was a HUGE error. Filed away without the doctor seeing. They wanted to put me in a room and wait for the Doctor's medical assistant. That did not make me feel good, so my friend/therapist said "No, just give her the report, and now!" They did and No, yeah, no Acousitc Neuroma, but an incidental finding of a "vascular loop" (in my tinnitus side). Maybe I was misled by the "incidental finding" notation - doesn't that usually mean AOK? In one sentence they said middle third of internal auditory canal, in another, the outer third of internal auditory canal.

Ok, flashback to reading Dr. Google and being shocked. While not AN, which I am thankful for, because the treatment creates more problems than the ongoing symptoms (but it will save one's life), a "vascular loop" seems to be able to put pressure on the vestibular and auditory nerves if located where mine is and cause tinnitus, hearing loss, balance issues, etc., so this becomes an issue of choosing between brain surgery - which has risks, but also possibly relieving the pressure and resolving the tinnitus and other issues. I think the normal course is to live with it and avoid the risk unless it becomes debilitating.

So there is the good new / bad news, but so far, without discussing with the doctor who is suppose to call, but based on my MRI experience, that might be like waiting for GODOT.

And NO BRAIN METS!!!!!! (You know, I was happy to eliminate a lot of causes, but really, it's not quite satisfying to know how this will develop, yet.)

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Jul 31, 2018 03:17AM sas-schatzi wrote:

Quinn please, call me----------you need a lawyer...........hope you got all copies of everything. 

It is so much easier to explain by phone the errors that I see in your post.      Perhaps, no lawsuit, but .............let's just leave it at the, but right now I'm suspicicious.  Look, I'm a biacth on medical stuff 

Sending a PM  with phone number------call after 12  and before 6

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jul 31, 2018 08:42AM windingshores wrote:

Does your tinnitus pulse?  My daughter had a procedure that put coils inside blood vessels to stop her pulsing tinnitus. Mine does not pulse and is not related to blood vessels, so no treatment.  Mine was caused by an MRI, I believe.

My daughter chose to have that procedure despite risks: she is a composer and could not do her work with that noise.



Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Aug 2, 2018 01:27PM QuinnCat wrote:

Windingshore - my tinnitus does not pulse, which one usually suspects from a vascular loop pressing against the Vestibularcochlear Nerve, but from my research, 20% do not pulse.

Did your daughter have brain surgery? I can't even imagine what this means, to put coils inside blood vessels. The MVD procedure I mentioned by me is about putting a piece of teflon between the insulting blood vessel and the nerve. It requires a craniotomy.

How do you think an MRI caused your tinnitus? The magnet moving something? In my case, my unilateral tinnitus started with an allergy (itchy ears and eyes, sneezing, my symptoms), but also for the first time, loading up on allergy meds, which I've never done before. A Facebook friend I am following has the exact same origin of unilateral tinnitus as me and a vascular loop in her inner auditory canal too. I am going to follow her impending surgery and outcome. Supposedly, only two doctors (neurosurgeons) in the country do MVD surgery for tinnitus. Usually neurosurgeons specializing in MVD only do this surgery when it affects the trigeminal nerve. The same principle though, a vascular loop putting pressure on a nerve, also in the bundled cranial nerves that goes thru the Inner Auditory Canal (IAC). The best I can tell, when there is pressure on the trigeminal nerve, there are more cosmetic and pain issues, so maybe the trade off - brain surgery, seems worth it. I suspect, similarly to cancer, the SEs of chemo are ignored as they are "saving our lives".....doctors might think tinnitus is better than the risks of brain surgery? That's all I can come up.

These two surgeons, one in Pittsburg, and one in Buffalo, were trained by the originator in Pittsburg, who is retired now.

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Aug 17, 2018 12:25AM sas-schatzi wrote:

Quinn, I wish we could talk by phone...…..too much for me  on the written...….

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Aug 29, 2018 11:53AM swg wrote:

Wow..I'm so glad so many ppl have found this thread useful!!

I haven't been on in a while.

My tinnitus hasn't decreased. I think I just have gotten used to it.

Right now I'm more freaking out about my 1st mammogram coming up since my original BC diagnosis. I can't believe it's been a yr, almost, since I was originally diagnosed.

I'm just happy to still be here and be relatively healthy!

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Aug 30, 2018 12:38AM Meow13 wrote:

My new ENT doctor sees why my ear is giving me a problem unfortunately surgery to fix the problem would result in hearing loss, so I will live with it.

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Aug 31, 2018 04:50PM Georgia1 wrote:

SWG, good luck with the follow-up mammogram. My six-month was clean (yay!) with my 12-month check-up not until October.

And to all, I wanted to post a follow-up that I got hearing aids at Costco last week. My hearing loss is just at the upper register, but my ENT says that for some of his patients, tinnitus decreases substantially after having hearing aids for 30 days; it sorta resets the brain. I'll let you know how it works for me.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 9, 2018 10:04PM - edited Sep 9, 2018 10:07PM by sas-schatzi

Hi folks, been off for a long time. Georgia, YAY. I'm working on aides too. But delaying till December so I can pay for one for this year and pay for one for next year s---taxes.
Hoping the tinnitus thing subsides with the aide.

Gettin externals b/c no matter what I do, I have an ear itch. Externals will not add to scenario

I was recommended to get at aides at 10---------now 68. Odd even at ten, I said not good enough. Now, yes, technology is there. I am such a nerd, I haven't even gotten them yet and I'm thinking who to Will them too. At vicinity of 5200$'s.  DUH, they should be useful to someone after I'm gone. Particularly, if they are external.

I read back, already forgot much.

Quinn forget why I suggested a lawyer? Methinks I sent you my phone number, if I suggested you calling then there was a reason.  Offers still there.

Swg hope all went well with follow up. HUGS

FYI to all:  the reason of a stent placement in the carotid  for Windingshores family member was Carotid Stenosis. Blockage of the Carotid artery. It's a very specific reason for pulsing typing tinnitus. IF it is the first symptom of unusual "noise" it should be evaluated by PCP who quickly sends you on to a interventional cardiologist.  This should not be ignored. Repeat should not be ignored. DUH,  repeat should not be ignored. Hmm did I say it shouldn't be ignored.

WHY?  Can be related to hypertension, but also can be a precursor to a stroke. Scary? Yes. That is why I say "do not ignore a pulsing "Noise Change". The key to life is knowing what is trouble and taking the right action :)

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 9, 2018 04:57PM QuinnCat wrote:

Hello everyone. I think this is the longest gap of being away from BCO since my dx 11/11/11. That is good! Traveling (though still with tinnitus). I am not pursuing the possible cure with brain surgery, though I’m convinced based on MRI results that vascular loop sitting in my IAC is the probable cause. It gets easier to live with the longer I go on with it. Quiet times can be tough, but not so many of those

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Oct 9, 2018 05:00PM - edited Oct 9, 2018 05:01PM by Meow13

My ENT looked and saw my ear problem. The solution is to make a little hole to relief the pressure. But it causes hearing loss so I am not doing it.

Looks like I am repeating myself, sorry.

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Oct 16, 2018 12:07AM QuinnCat wrote:

Make a little hole where Meow?

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Oct 16, 2018 03:25AM Meow13 wrote:

In the ear drum to relieve pressure.

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